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Black women are less likely to learn about the clinical trials that they might qualify to participate in, and they are less likely to have easy access to the trials,” says Dr. Owens.
Trials usually take place during working hours, in universities, hospitals, and clinics. These institutions, particularly the ones conducting research, are often located in larger cities or wealthier, whiter areas, adds Dr. Owens. Black people eligible for trials may find it difficult to reach the sites, which are not often located near their communities. Or participation in clinical trials that could benefit long-term health may be trumped by the demands of immediate family needs.
There are well-documented factors that shape Black women’s breast cancer risks. Yet, the reason that African American women are less likely to develop the disease but more likely to die from it, continues to baffle doctors and researchers. The answer to that question might be discovered in clinical trials—but Black women are repeatedly underrepresented in these studies. Increasing Black women’s participation in oncological clinical trials is essential to answering complex questions like these, but individual and systemic barriers muddle the situation.
Clinical Trials have become an important part of breast cancer care. These are research studies and participation is entirely voluntary. In some instances, patients choose to participate in trials because they gain access to investigational treatments or novel therapeutic approaches according to Paul Levine M.D., for example, there is growing evidence that therapy that utilizes a patient’s own immune system to kill cancer cells may be of particular interest in inflammatory breast cancer (IBC).
Despite comprising 13% of the total population in the United States, Black Americans represent just 5% of participants in all medical trials and 4% of those participating in oncology trials. Let’s look at why clinical trials are especially important for Black women and the considerations necessary to improve participation.
Feeling alone after a breast cancer diagnosis? Breast cancer is the most diagnosed cancer in Black women, who have a one in nine probability of developing the illness. And while Black women still have lower rates of diagnosis than white women, there are some key differences, including being diagnosed younger, at later stages, and with more aggressive forms like inflammatory breast cancer (IBC), triple-negative (IBC) according to the American Cancer Society.Patients in mostly Black and segregated areas are more likely to be diagnosed with cancer later, after it has spread, leading to lower survival rates in these communities. What’s more, Black women are less likely to receive adequate screening, so they are sometimes left undiagnosed until they have metastatic, or late-stage cancer. The chance of surviving cancer in advanced stages is significantly lower, making the prevalence of inadequate screening fatal.
Vivian J. Bea, M.D., section chief of breast surgical oncology at New York-Presbyterian Brooklyn Methodist Hospital, says the disparities in access to detection and monitoring impact treatment and clinical trial access. Black women are less likely to be diagnosed with breast cancer, they often do not have access to potentially life-saving trial treatments.
Although clinical trials do exist for some advanced breast cancer, successful treatment at this stage is more difficult. Even if Black women can participate in late-stage trials, the chance of survival is lower than if they had been diagnosed earlier or had access to early-stage cancer trials.
The Black community is hesitant for good reason, says Dr. Bea, alluding to the legacy of racism in clinical trials. The most famous example is the Tuskegee study, in which Black men were unknowingly infected with syphilis and then denied adequate treatment. Still, Dr. Bea views clinical trials as a chance for science to improve and increase access to care; especially in cases where a treatment option hasn’t been approved for public use, but a patient needs it to survive. The advancements we’ve seen in care, like reduced rates of mandatory mastectomy, are all thanks to clinical trials.
Many factors influence care and awareness of treatment options, including Black women being less likely to have a strong relationship with their providers, says Charlotte D. Owens, M.D., adjunct assistance clinical professor of Obstetrics and Gynecology at the Morehouse School of Medicine. There’s some hesitancy, too, around the trustworthiness of providers and the medical establishment. In this tense construct, it’s not surprising that providers assume Black patients are not interested in participating in clinical trials.
The Aspen Institute defines structural racism as “a system in which public policies, institutional practices, cultural representations, and other norms work to perpetuate racial group inequity.” Unfortunately, it is present in medical institutions, too.
Studies have shown that medical personnel continue to hold racial biases, rating the pain of Black Americans as lower than that of their white counterparts, leading to less accurate treatment and trial recommendations.
Structural racism doesn’t occur just on an individual physician level. The US Preventive Services Task Force, for example, recommends mammography screening to begin at 50, ignoring the fact that Black women often develop the disease at much younger ages.
Black women have unique genetic considerations in their breast cancer experiences. They are more likely to have a diagnosis at earlier ages; their breasts are denser; and they are more likely to develop aggressive forms of breast cancer including inflammatory breast cancer, triple-negative (IBC) "A lack of representation in medical research can have serious implications,” says Dr. Owens says, including treatment guidelines that are irrelevant or inaccurate. Increased participation by Black women (men, trans, and nonbinary individuals, too, who also get breast cancer) in trials can help solve this disparity
This is especially true for women of color who may have experienced discrimination in the healthcare system. “The Black community is very hurt and very distrustful of scientific communities because of what has happened in the past and is still happening now, When you’re dealing with a cancer diagnosis, you need a provider you can trust with your life—literally.
Unfortunately, IBC remains one of the most misunderstood forms of breast cancer. Fighting 4 the Tatas Inflammatory Breast Cancer exist to help educate women about life before, during, and after diagnosis. Joshlyn Earls says that her mission is to provide women with the resources they need to spread the message of prevention and survival to others. “We have to ensure that women are using their voices and are amplified as empowered advocates in their care,” she notes—especially Black women and women from underserved communities.